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Anyone have fibromyalgia?

Posted: Thu May 17, 2012 9:46 pm
by Potter's Farm
I was diagnosed with fibromyalgia 2 years ago. To start with i just suffered from the pain and chronic fatigue (also other minor symptoms which i can't be bothered to list), however in the last few months i've been suffering terribly mentally.

I slip away into what i can only describe as a dementia-like episode. I know that fibro comes with 'fibro fog' - general forgetfulness and mild confusion, but with this i lose the ability to speak, to make decisions, really to function at all. My poor uncomplaining husband has to put my to bed and keep me safe until it passes.

It has been occurring more often i the last 8 weeks or so. My doctor has put me onto Lyrica for a month, and has mentioned brain scans if i show no improvement.

I'm not complaining or looking for sympathy, i have a wonderful life, but i feel so bad for my husband. His first wife passed away from cancer aged 41, and now i have this. I will try anything that might make an improvement. I am very careful with my diet, i no longer drink alcohol or caffeine and try to stay active.

We're thinking that this is too severe to be fibro-fog and would welcome any information any of you might have.

Thanks, Lisa x

Re: Anyone have fibromyalgia?

Posted: Thu May 17, 2012 10:28 pm
by trinder
So so sorry my friend. I had to google the term, so have no idea how I can make any helpful suggestions. From what I read it is highly complex disease and the suggested "therapies" are so broad that it would indicate that it is a fairly vague "suck it and see, what works for you"

My only caveat is to unpick the words "dis ease" ergo -- not at ease----and to explore how your body is rejecting what "you" and the decisions you have made/ or are making are perhaps not good for you.
My warmest wishes are with you xx

Re: Anyone have fibromyalgia?

Posted: Sat May 19, 2012 4:18 am
by Ellendra
I had dizzy spells that sound like that, turned out to be a misalignment in my neck. I see a chiropractor every few weeks to deal with it.

Re: Anyone have fibromyalgia?

Posted: Sat May 19, 2012 7:41 am
by Jandra
Fellow sufferer here. Has your docter mentioned getting your vitamin B12 blood levels tested? Are you a vegetarian? Then you're more likely to be deficient in B12, but not necessarily so.

Deficiency symptoms include: Confusion, memory loss, or dementia. Dizziness, trouble maintaining balance, and fainting. Fatigue or weakness.

Mark: I've heard some people have an uptake problem of this vitamin. They need injections to boost their level, because anything they ingest orally isn't absorbed properly. As 'things' sometimes work differently in bodies with fibromyalgia I'm just mentioning this. Don't know any details.

Hope you get better soon!

Re: Anyone have fibromyalgia?

Posted: Tue Jul 03, 2012 10:38 am
by Potter's Farm
Thanks everyone, we now think its something more than just the fibro, i'm on a waiting list for brain scans, will let you know how i get on xx

Re: Anyone have fibromyalgia?

Posted: Tue Jul 03, 2012 11:27 am
by Pumpkin&Piglet
I don't know anything about the condition but can you not help with symptoms of dementia by keeping your brain active?

I heard of a fantastic chess player dying and looking at his brain it was discovered he'd had alzheimers but because he'd been mentally active the symptoms weren't severe

Or is that total rubbish? I'm sure there was more too it but I imagine the principal is the same?

Re: Anyone have fibromyalgia?

Posted: Tue Jul 03, 2012 2:11 pm
by Jandra
I'm keeping fingers crossed for you that they'll find out what's wrong (and of course that it is - preferably easily - curable).

Any idea how long you'll have to wait for the scan? Must be nerve wrecking to have to wait.

Best wishes!